Webslave on hypersensitivity or allodynia

[Sherradin]

Hi Webslave

Today I saw my specialist who is a wonderful man. As I am improving gradually we agreed to drop the dose of my Lyrica to 50mg a day with 5mg or Endep(your Elavil). We also decided to try Valium for the break through pain I get in the afternoon that seems to be aggravated by sitting or stress. So thinking it was possibly muscular as some of my pain has been I know after the course in SF has been from trigger points and shorted pelvic muscles. Anyway the pain was the same but after Endone (which I musn't mix with Valium) the pain goes within an hour. This would indicate to me the pain remaining in the muscle under my bladder ( bulbospongiosus?) which is painful to the touch is hypersensitive I think from vaginal infections I struggle with. It is always worse when I get thrush from too many warm baths.

SO the question is, as you alluded to in a previous comment to me: how do you calm the allodynia? I am combining nerve drugs with stretching with yoga and meditation. Is there anything more I can do apart from stopping any other forms of of irritation like infections. (I have just had a big course of Sporonox and no more baths for me little girl). Any more thoughts on calming irritated nerves?

[webslave]

Tramadol, gabapentin, methadone. There may be newer treatments emerging, eg anti-TNF-alpha.

[gmccormack]

I think you'd have a hard time getting prescribed methadone for CPPS, it still is lacking the debilitating reality it deserves.

Thanks Web for the link from WEBMD on neuroinflammation, one thing chronic prostatitis / chronic pelvic pain syndrome has given me is an interest in these types of immunomodulatory drugs and mechanisms. I think your right in the future maybe not so near there will be dozens of these types of meds FDA approved. I would guess you will really start to see the first class in 4-5 years (some do exist) but the kinks will be worked out and they'll get really effective in maybe 10 years.

[webslave]

The other way to get rid of allodynia is the hard way: treat the stimuli that have caused the allodynia (ie trigger points) and then wait while the nervous system "unwinds". In bad cases it can take years, but eventually it all returns to baseline.

[Sherradin]

Webslave that's all I really wanted to hear. No more drugs. Going to stick to what I know: Lyrica 75mg 5 Elavil at night and Endone small for breakthrough afternoon pain with sitting at work but concentrate on managing my stress. (if I get out for yoga at lunch it is much more manageable). I am happy to stick with the long haul. I have been mediating now for over two years and it has changed the way I think. At work I used to be more short term, it has lengthened my attention span, made my thinking clearer and made me so much calmer and less judgemental. Its part of my life now and I hang out for yoga the way I used to hang out to do weights or a step class. So there are some positives from this crappy experience.

[gmccormack]

Webslave,

Do you have any factual evidence of this or just personal experience? I have been diagnosed with allodynia, neuronal windup, etc. I no longer have any trigger points, are you saying that in time the neuropathic pain that I have in my feet and hands will fade away?

Maybe it would be easier if we eliminate trigger points something you wouldn't use to treat, say peripheral neuropathy or "stump pain" both considered to be neuropathic pain with very little medications that consistently work, in time do you think that this pain subsides?

[webslave]

Peripheral neuropathy, if you have it, is different to allodynia. But with allodynia and hyperalgesia, if you read the studies you'll see that most therapies are aimed at blocking the pain so that the over-reaction can subside. It's like stopping people walking down a path through grasslands so that the grass can grow back.

[Sherradin]

Love the analogy.

gmccormack two years ago I had burning feet and teeth when my pelvic pain was at its worst and shooting nerve pain in my left leg. I was told there is no cure and I would have to live with it. The Lyrica, meditation, yoga etc have been my gate to grass path above. I still get pelvic nerve irritation but the teeth pain and feet pain is rare now. If you have had this for only a year then you have a long time to heal. I resisted the nerve drugs for a while and all the pain and anxiety over the pain sensitized my nervous system but I am unwinding that by doing things differently.

[gmccormack]

thanks sheriden,

So we'll say then that certain neuropathic pain can be alleviated by treating the nociceptive pain that caused the neuropathic pain. Some neuropathic pain there is no cure or intervention, chronic prostatitis / chronic pelvic pain syndrome related neuropathic pain may not be in this category.

[webslave]

I always say that it's a mistake to try to understand this disorder at that complex level, especially when researchers themselves are not quite sure what's happening. To give you an example of the complexity, here's a description of wind-up:

WIND-UP PAIN
Wind-up pain is caused by constant bombardment of the second order neurons in the Dorsal Horn of the Spinal Cord. This creates several problems, including sprouting of Wide Dynamic Range (WDR) neurons and induction of glutamate dependent N-methyl-D-aspartate (NMDA) receptors. This type of glutamate dependent receptor is extremely fast and appears to be responsible for not only amplifying pain, but causing opioid tolerance, as well.
As pain signals continue to enter the Dorsal Horn and synapse with the nerve cell bodies located there, WDR neurons can be found in areas of the Dorsal Horn, where they were not previously located. Specifically they grow into the areas where pain receiving nerve cell bodies are located. WDR neurons can experience a broad range of stimulating signals and pass these on to the brain or spinal cord. Once C-nociceptive fibers are activated and continue to bombard the nerve cells in the Dorsal Horn over extended periods of time, Aß touch sensitive fibers begin to fire and this effects nerve cell bodies in the Dorsal Root Ganglion (DRG) and the Dorsal Horn. Glutamate, an extremely fast neurotransmitter, is released at the DRG presynaptic membrane and attaches to non-NMDA receptors in the nerve cells in the Dorsal Horn. After continued bombardment by C fibers and Aß fibers the Magnesium, which normally prevents NMDA post synaptic receptors from receiving Glutamate, is displaced and wind-up begins. Due to ongoing pain signals reaching and being amplified at the Dorsal horn, the nerve cells begin to increase the number of NMDA receptors at the post synaptic membrane. This further increases Windup and exhibits a nasty side effect of causing increased tolerance to opioids.

[gmccormack]

Thats very helpful, especially the slide show, thanks.

I agree researchers don't understand the complexities of neuropathic pain, but that doesn't mean that chronic prostatitis / chronic pelvic pain syndrome is something that isn't complex. You are one of the most knowledgeable people on this condition and have done more for the cause than any research group, but this condition is far more complex than tight muscles and anxiety and you've attempted to explain these gray areas over the years. There are way too many unanswered questions and way too many subsets of patients to accurately diagnose what is going on in the body at the current time, minus anxiety and tight muscles.

While most people can become 99% relieved or 95% relieved, whatever, what is that missing 5%? What has caused irreparable damage that the patient can't return to 100%? What happened in that first mere 72 hours of the initial onset to cause the blurring, mind numbing pain? There are so many unanwered questions that the researchers/clinicians can't answer that make chronic prostatitis / chronic pelvic pain syndrome so complex.

[webslave]

I'd say I'm 99% better now. The remaining symptoms, few and far between, I ascribe to permanent changes to the nerves. A better example is the damage I did to my hand/wrist by using a computer mouse. Terrific pain after 15 years constant use, so I stopped using it about 10 years ago, and the pain went away. But when I went to chop down a tree a few years back, the tight gripping of the axe caused a flare of the long-gone hand pain. The nerves seem to "learn" damage, and once it's there, it can be re-provoked.

[robertpagen]

WS, The analogies and observations of yours on this topic are appreciated. I have never met a physician with even a rudimentary understanding of this topic.

Be well,

In Chengdu, Sichuan

Robert

[we.the.hulk]

Hi everyone. Thought I'd throw my question here, since this is such a great post. Probably should be in best posts.

I've been dealing with chronic prostatitis / chronic pelvic pain syndrome for about 9 months. Attended Santa Rosa straight away. Since beginning meditation 2x / day and learning internal pt with the wand & this website and webslave, I've managed to clear all my original symptoms (burning urethra / head of penis pain/buzzing/). In fact, those symptoms seem fairly easy to clear. Wish I'd understood that in the beginning. I figured if I cleared these things I'd be done. But no. My old pains have become a new pain. Bladder pain and a feeling that the bladder is unhappy. I can "feel" the bladder almost all the time now. This bladder pain didn't occur until after I attended the clinic, so roughly 5 months into CPPS. Never before in my life have I ever even noticed my bladder (coffee, alcohol, chocolate..nothing ever bothered it). The bladder itself seems super fine. I go 5/6 hours without needing to urinate sometimes. If it were an IC bladder, I don't think this would be possible. So must be hyperalgesia of some sort. For some reason, docs I've seen would rather diagnose IC than discuss neuropathy.

Anyway. My question is, has anyone used METHADONE or have experience with methadone for this type of pain?
Webslave. From reading on methadone, it seems to be a really good choice for nerve pain. Do you have any trial data or know how long one would take methadone in order to see healing begin?
Can one function on methadone like one functions on Vicodin?

Apologies for being long winded!
Best to all! Stay positive

[webslave]

Methadone is an opioid, and so the warning we give about using opioids should be noted.
viewtopic.php?f=9&t=3698

Methadone has not been studied in the treatment of chronic pelvic pain or bladder pain. It would be interesting to read your report of the effects of treatment!

Take note of the warnings about methadone, especially the report entitled "Methadone Use for Pain Control May Result in Death and Life-Threatening Changes in Breathing and Heart Beat."